Using the Right Words

She was referring to the health of a mutual acquaintance, and I struggled with the question. What is the correct answer?

If you could look back through the years, you would see me on my knees, in tears and defeated beside a patient I had just lost. He had been the same age as I, and we had got to know one another well over the previous two years, during his various hospital admissions. He always greeted me with a cheerful smile, and the words:
“Here comes Trouble!”

However, that had not happened this time. He didn’t know me, and struggled to stay conscious. For four hours, as his condition deteriorated, I had futilely and naively attempted to stand between him and the juggernaut of death. That night I learned that such things are not possible. Once the juggernaut starts rolling, strenuous efforts are meaningless: you are cast aside as easily as a piece of straw.

I had learned the meaning of the words used in my training:

“The unique function of the nurse is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge. And to do this in such a way as to help him gain independence as rapidly as possible”*

Wherever necessary, thereafter, I became a facilitator. Once the course was irrefutably marked, it is the kindest thing to do. And so I would answer my friend:

The worst -case scenario is when you are ignored, or you do not receive the appropriate assistance at the appropriate time.

This definition called to mind the Clergyman I had nursed forty years ago, who was in renal failure.(Let’s call him David.) He underwent dialysis every week, on a Monday, Wednesday and Friday. He lived 80 miles from the hospital. Therefore, hours were spent waiting for treatment, having treatment, and travelling. The day after dialysis he was recovering, before returning the following day to do it all again. He was too exhausted to carry out his pastoral duties.

David explained to me that his faith and ministry were his life: they were interlinked. If he could no longer give pastoral care, life ceased to have meaning. We talked together for a long time, and I knew the pressure and frustration he felt. Latterly, I just listened. Eventually, after some weeks, he decided to ask the Consultant if he could be managed by diet alone, as dialysis provided him with no quality of life.

Such requests were usually carefully considered, as it was a slow route to death. When I next saw David, he was devastated. His argument had failed: the Consultant thought he was depressed. David was to be admitted to the Intensive Care Unit for regular dialysis and observation. I felt for him in his grief and desolation, and promised to come and support him.

And so I visited with him – on two occasions, over the next week. The transformation was astonishing. With the realisation that he was going to be forced to live, an iron determination had come over him. He was a malleable and a very obedient patient, eating and drinking when told: undergoing dialysis without complaint. But his essence was somewhere else. He was quite cheerful now. I asked him what had changed.

“I am determined that they cannot keep me in this world against my will,” he replied.

I did not quite understand his meaning, and asked for clarification. He smiled at me serenely.

“There is nothing stronger than the human will,” he replied. “I know where I am going, and I have no fear. I have genuinely done my best, and made the greatest effort I am capable of making. I want to thank you for listening to me, and I would very much appreciate it if you said goodbye to me today.”

I did as he asked: disbelieving. Yet there was a command and surety in his tone, which I had never heard before.

That was the last time I saw him. He simply refused to live. I had seen nothing like this before, so it was a lesson for me. Doctors did not know what to put on his death certificate, and I had to smile at one of the junior doctors who protested:
“But there was nothing wrong with him!”

His electrolytes were in order, therefore he did not die of renal failure. He had no infection. He was well hydrated and well fed.

For David, this was “the best case scenario”: and these are the words that should be used, as they take into account the feelings of the patient. He would not have taken his own life, and he tried to fit in with the options available. However, he had become sick and tired of the battle; he could enjoy neither his life nor his work. Food held no anticipation or joy,and there was nothing to which he could look forward – not even a holiday. He was exhausted and weak, and considered himself a drain on both his Parish and the NHS. Death offered the most welcome relief, and I felt genuine pleasure at the swiftness and ease of his passing.

I found the same scenario played out, when my own father became progressively weaker in his last illness. He said to me one day as we sat together:

“This isn’t life, Linda.”

My heart sank, and I heard the tolling of a distant bell in my head. I had to agree:this was no longer the vibrant, interesting, full and challenging life he had known : this was the slow, lumbering approach of death. I knew that when someone has uttered these feelings, time is short. All you can do is walk beside them, hold their hand, listen to them and make their passage as easy as possible.